Two years in the past, I’d by no means heard of triple-negative breast most cancers (TNBC). Now, it’s a part of my medical historical past, my Google search historical past, and—my private story.
In late September 2020, I sat in a big examination room, carrying a darkish pink robe for the sixth time that month. My husband stood beside me. The medical transcriber typed away within the nook. The nurse navigator leaned in opposition to the wall holding an overflowing folder of knowledge. And my surgical oncologist, who sat beside me, wrote “triple-negative breast most cancers” throughout the highest of a breast most cancers fundamentals printout.
I keep in mind considering, “She’s going to write down down all of the various kinds of breast most cancers and educate me about them.”
However she didn’t write down another varieties.
My thoughts went again to a day simply two weeks earlier when a pal advised me the story of her sister-in-law, who was additionally recognized with TNBC. “You understand, the actually dangerous form,” my pal stated. I’d nodded as if I understood, however I didn’t know there was a “actually dangerous form” (wasn’t all most cancers dangerous?).
Panic and denial flooded my mind as I recalled this story and linked it to the handwritten phrases in entrance of me. In that house of seconds—which felt like hours—my oncologist waited quietly, assembly my eyes when it lastly clicked.
This was my story now.
Why Storytelling Issues to Well being Tech
When you’ve gotten an essential message to share along with your viewers, supply is essential—and storytelling is without doubt one of the simplest autos for transmission. Right here, we’ll have a look at what occurs when well being knowledge is delivered via a narrative.
1. Tales remodel knowledge.
By itself, well being knowledge isn’t often a riveting learn. However while you hear it embodied in a narrative, one thing occurs. Numbers develop into folks . A symptom raises a purple flag. Instantly the knowledge is compelling (cue a 3 a.m. well being portal e-mail to your physician).
When well being knowledge—be it anecdotal or scientific—turns into a real-life, real-time story, it adjustments every little thing. And on at present’s well being tech platforms, the strains between story, expertise, and knowledge are crossing on a regular basis.
Derek McCracken, a lecturer for Columbia College’s Program in Narrative Drugs, is keenly on this intersection, which in the end begins with info. And as any storyteller is aware of—from journalists to copywriters to medical transcribers—the info matter.
“On this twin pandemic/infodemic, fact-checking has taken on a complete new that means,” says McCracken. “If we contemplate knowledge to be uncooked, collected info, then we might assume that the well being info we’re gathering and receiving is nice info: legitimate knowledge that’s organized and introduced in a relatable context to make it helpful.”
With tech instruments at practically everybody’s fingertips, we will all collect uncooked knowledge. We will accumulate info and discover an abundance of well being info, not all of it good (I definitely did my share of googling my prognosis—in opposition to physician’s orders).
However how do we all know it’s legitimate with out experience or expertise to interpret it? And what makes it helpful?
Making significant connections via story
“Usefulness is subjective, and that’s why story is crucial to clear well being communication—inside or with out well being tech platforms,” says McCracken. “Story transcends expertise.”
My pal and I’d have by no means mentioned breast most cancers till it was a possible prognosis, and her sister-in-law’s TNBC story would have been irrelevant till I noticed these phrases within the examination room. This complete info alternate occurred outdoors of well being tech platforms.
However in an period when telehealth has develop into a main mode of supply, many newly recognized people (and their caregivers too) have turned to well being tech for neighborhood, assets, and help. In these platforms, they discover tales that humanize the info they’ve been given and entry to assets for the journey forward.
When well being info has that means in real-life, in real-time, it turns into extremely precious—whether or not it’s in a well being tech app, written by hand on a printout, or shared in dialog. By tales, knowledge connects to the person/affected person in a related and private method.
2. Tales change conduct.
This private connection is the place tales get their energy, and that energy is commonly what strikes the listener to motion. Eleonora Teplinsky, MD, has seen this dynamic play out in new methods since beginning her podcast, INTERLUDE: Girls’s Most cancers Tales.
“I’ve been overwhelmed by suggestions that I get from ladies who make the aware choice to advocate for themselves after listening to a podcast episode,” says Teplinsky, who’s the Head of Breast Medical Oncology at Valley-Mount Sinai Complete Most cancers Care in Paramus, NJ, and a Medical Assistant Professor of Drugs at Icahn College of Drugs at Mount Sinai.
“In lots of circumstances, it’s a choice to get screened for most cancers—via a mammogram, a colonoscopy, pores and skin most cancers verify, or Pap smear,” Teplinsky says. “In different circumstances, it’s a lady who decides to go for a second opinion, to ask her oncologist about whether or not a drugs goes to be proper for her, or to talk up about negative effects.” She’s even heard from ladies who determine to make wholesome way of life adjustments.
These shared tales from friends inspire many sufferers to vary behaviors. However knowledge is equally essential in altering conduct, and it opens a pathway for provider-patient communication.
How knowledge + story creates dialogue factors
Daivat Dholakia, VP of Operations on the well being software program firm Essenvia, believes this interface between sufferers, suppliers, and knowledge is linked by one factor: tales.
“Storytelling brings folks collectively and connects them to one another and to info with out overwhelming them with summary knowledge,” says Dholakia. “As a result of tales are participating, we develop into receptive to the essential well being info they include, which might then assist folks change behaviors to raised stop a selected illness or well being downside.”
Simply as knowledge + story makes sufferers extra receptive to their supplier’s suggestions, the pair additionally helps suppliers perceive what suggestions to make.
“A health care provider can not all the time know the small print of sufferers’ lives: what’s essential to them or what motivates them,” says Katie Wilkinson, Head of Content material and Group at Paloma Well being, a well being tech firm targeted completely on testing and treating hypothyroidism and Hashimoto’s.
That’s why Paloma Well being created the Paloma app, which offers a data-driven software for sufferers to handle their continual thyroid situation.
“Each time you log in to the app, you’re inspired to trace your every day signs. You possibly can share this information along with your physician to provide extra perception into what goes on between your physician visits,” she explains. This additionally helps the affected person develop into an lively member of their care workforce: working extra collaboratively with their supplier, asking extra questions, and getting extra concerned in co-creating their remedy plan.
“When a affected person is obvious on their situation, targets, expectations, and desires, it turns into simpler to take accountability for every day self-management,” Wilkinson says.
3. Tales spark actions.
Even earlier than the pandemic, restricted face-to-face time with medical doctors—and entry to an abundance of information—drove sufferers on-line to get well being info and steering. So it’s essential for well being care suppliers and well being methods to be current in that house—to fulfill sufferers the place they’re, says Dr. Teplinsky.
A kind of areas is social media, a spot the place knowledge and tales consistently intersect—and the place influencers will not be all the time medical professionals.
“We all know that roughly 72 % of the US inhabitants engages in a minimum of one sort of social media, and the 2018 Well being Data Nationwide Developments Survey discovered that 70 % of US adults have accessed well being info on-line, with most cancers being some of the regularly searched well being phrases,” she says.
“The problem that we’re confronted with now’s combating misinformation, which may be very prevalent on-line. And it may be arduous to differentiate factual and evidence-based info from misinformation.”
Whereas this problem is critical, there’s additionally large alternative in it. “Social media and digital platforms have unbelievable energy to have an effect on well being outcomes,” says Dr. Teplinsky. And this energy is clearly embodied within the #feelitonthefirst motion—which began with a narrative.
A narrative turned lifesaving, international motion
Nalie Agustin first shared her well being story on YouTube after being recognized with breast most cancers in her early twenties. As she expanded her on-line presence, she impressed younger adults (males can get breast most cancers too!) to do a breast self-exam on the primary day of each month. That’s how the #feelitonthefirst motion began, and it continues, though she’s not right here (she died of breast most cancers on March 22, 2022).
Agustin was relentless in her advocacy for early detection as a result of arduous knowledge and anecdotal proof present that straightforward self-checks are instrumental in stopping advanced-stage discovery when remedies are restricted and the illness is incurable/terminal. She needed her story to go far and large, so different younger ladies didn’t have a narrative like hers.
And that is additionally her legacy, embedded in her Instagram account with greater than 120K followers; in numerous blogs, articles, TED talks, podcasts, and different public talking appearances; and in her best-selling memoir The Diary of Nalie.
4. Tales drive change.
What occurs to a narrative when it goes viral like Agustin’s? It creates a possibility to take the info even additional, elevating consciousness, driving choices, altering behaviors, sparking motion, and in the end, altering the narrative—which has the facility to avoid wasting lives.
What’s the distinction between story and narrative? McCracken defines narrative as a selected sort of story—an overarching account we give about ourselves and others that helps us affirm and hold observe of who we’re, what occurs, the place we’re, why we really feel a sure method, when occasions happen, and the way we reply.
“And narratives are highly effective as a result of they’re memorable and malleable,” he says.
- Nalie Agustin modified the narrative of early (breast most cancers) detection via her story and lasting legacy.
- Dr. Teplinsky is altering the narrative of well being advocacy via her podcast and social media presence.
- Firms like Paloma Well being are altering the narrative of continual care administration by participating sufferers via well being tech platforms tailor-made to their knowledge and tales.
The intersection of story, knowledge, and expertise creates a story larger than any statistic, prognosis, or well being choice. And these are the tales that can go on.
The takeaway
Backside line? If you happen to’re within the enterprise of tales, particularly healthcare tech tales, keep in mind the supply. Join along with your reader in relatable methods, not with jargon. Humanize the info to allow them to image themselves or a pal as a substitute of a faceless stat. Make it related, and make it significant. By compelling storytelling, you’ve gotten the facility…
- …to share helpful info,
- …to generate essential consciousness,
- …to encourage significant motion, and
- …to drive change.
That’s the facility of story, and all of us have it. Use it properly and nicely to serve your viewers—and it’s possible you’ll simply save a life.
Writer’s Observe: After my slow-motion prognosis appointment in September 2020, every little thing moved in quick ahead. However after intensive chemotherapy, a double mastectomy, 30+ radiation remedies, and far, way more—I’m right here, scripting this story. Most cancers-free. Therapeutic. And writing and modifying extra tales for Contently purchasers—most of them within the healthcare house.
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